Spent the Day at the Hospital

January 5, 2011

As we suspected, we did end up at the hospital today. We made it through the night with no fever, but Tanner woke up with no improvement in the neck pain, coughing and feeling bad. While we were waiting to be seen, I noticed she had developed a lacy rash on her arms and neck. I actually felt relieved about that because it meant that she probably had a virus as opposed to swollen lymph nodes because of reasons I can’t even bring myself to write.

The doctor agreed that she probably has some kind of virus and has tested her for all viruses, but specifically for Epstein Barr and Parvo Virus. Epstein Barr is the virus that leads to monolucleiosis for some people, but not all. Parvo is commonly called Fifth’s Disease or Slapped Cheeks because it can cause red cheeks and is accompanied by a lacy rash. Neither will be a great situation as both viruses are known to compromise bone marrow and can cause anemia. In the normal person, their bone marrow can compensate and regenerate quickly. Tanner’s will not. If she has either of these viruses, her counts will likely drop across the board and necessitate blood and platelet transfusions and bottom out her neutraphils. It would take a while for her body to recover. The results of the virus panels will not come back for a few days.

Waiting for an antibody transfusion

Dr. Mixan decided to give her an IVIG transfusion. This is an antibody transfusion that might help her recover from this virus. The effect of an IVIG transfusion is not proven on ALL patients, but anecdotally, it has helped Tanner in the past. She is almost always low on the IgG antibody, but we usually don’t transfuse until she’s below 400 (600 is the low side of normal for a kid her age). She was at 481 today, but we thought it might help. Unfortunately, it has a common side effect of nasty headaches for a few days. Tanner had one last time (this is her third IVIG transfusion) so I’m waiting for that shoe to drop.

Tanner cried today thinking she might not get to go to Alice in Wonderland rehearsal on Friday night or her first Annie rehearsal Saturday. I’m hoping she’ll get to be in the plays at all.

She cried a lot today. About going to the hospital this morning, about being “sick,” about possibly missing things. She is just so sick of all of this. I want to hug her and comfort her and tell her I understand, but unfortunately, I think it doesn’t help her be strong… and she needs to be strong. We reminded her today that everyone gets sick, not just people with leukemia, and that this isn’t that big of a deal. But, I think she is smart enough to know that when “normal” kids get sick, they don’t have to go to the hospital and have blood drawn and get transfusions. As always, though, she bucked up and is holding it together, at least for now.

Please, please send good thoughts or pray or whatever you do that this is just a bump in the road and not a break down that will cause her to miss lots of school and these plays she so desperately wants to do.


On Its Way Out

I think the radiation is definitely on its way out. I feel much better today after several days of mild malaise and fatigue. Even stopped by the house today to pick up Domino and take him for a walk. The walk was tiring, but it felt good to get moving and be outside. I think my friend Kim is going to come home to find a permanent indention in her new sofa in the shape of my heiney. I’ve read two books and watched countless movies and even gotten a few (a very few) things done.

Mostly, I miss my family. John and the kids seem to be doing great, but I know it is unsettling for the kids to keep having me drop out of sight while I recover from the surgeries or now while I am hiding my glow from them. Tanner still doesn’t know I have cancer, but I think she is smart enough to figure out that it’s somewhat serious and it makes her anxious. But, mostly I think they just miss their mommy… and I miss them. Still, I think John has really enjoyed his time with them.

I’ll come home Tuesday. Even though I can’t touch the kids more than 30 minutes cumulatively each day, I can at least be around them by then and I can help. And, I can get hugs, even if they’re quick. That will feel good.

I go back to Vanderbilt Thursday for a body scan to see how effective the treatment has been and determine if the cancer had spread anywhere outside the thyroid. If it had, the cancerous tissue would have absorbed the radioactive iodine and it would show up on the scan. I think I have to lie still for 1 ½ hours (can you say, “Nap?”).

I ended my low iodine diet today at dinner time. John and the kids did a “drive by” and brought me Jets pizza, some candy and a cake in the shape of a turkey that says, “Glow, Mama, Glow.” I laughed out loud. Jake was so cute bringing me the candy. He put it on the ground and backed away from me and said, “You’re done with your diet!!!!” Sweet thing. It killed me not to be able to give him a big hug.

Tanner has her Annie callback tomorrow night. She seems to have gotten over her cold and cough pretty much, so I think her voice is back in singing form. I wish I could go so badly, but I’ll just have to get a report from Daddy.

Thanks for all the well wishes. People have been so nice… as always.


Clinic Day #43

November 3, 2010

I don’t know why it surprised me. It shouldn’t have. It’s not like we have not known all along how kind the people at Vandy Children’s are. I think it was just stunning to look at all the kids who were in the hospital today and realize that the comfort and peace of mind of just one of those children was so important to them.

Today, when we went down to the surgery waiting area for Tanner’s LP, both the Childlife Specialist, Sara, and the music therapist, Jenny, came with us. Then they accompanied us to the pre-op room and, finally, to the operating room itself. They played music, dealt a hand of UNO, and generally, were engaging enough to distract Tanner from the impending, dreaded sleepy milk.

It was a vast improvement over the past few times. There were no anti-anxiety drugs, no tricks, no deceit. She did cry and get scared at the very end, but the lead up was so much better. She was just having too much fun to get so worked up.

In the end, I carried her to the operating room and held her while they pushed the sleepy milk into her port. She buried her head in my neck and cried, then finally went to sleep. I laid her down on the gurney and we left to spend another ½ hour in a waiting room we now know like the backs of our hands. It was the best it could be, but let’s face it… it still sucks.

So, four kinds of chemo delivered three different ways… plus steroids… in one day. Anytime I start to feel a little nervous about the radiation next week, I remember all she endures.

Her counts were good… too good at 2,600, so they upped her chemo again. I suspect she will feel pretty bad tomorrow, but you would have never known it this afternoon. She danced and sang and she and Jake put on a superhero show for Aunt Beth. And, unbelievably, had trouble going to sleep tonight because of the “nap” she had at the hospital.

Heard about yet another little girl from Franklin diagnosed with leukemia this week. Please pray for her family as they struggle to comprehend the incomprehensible and for this little girl that the chemo begins to heal her quickly and her body responds as the doctors hope it will.


Headed Home — Minus a Thyroid

September 15, 2010

We’re waiting for discharge at Vanderbilt where I stayed last night after having the second half of my thyroid and, hopefully, all of my cancer, removed. Everything went very well, but we won’t know for sure whether or not I’ll need any radioactive iodine treatment until I see the endocrinologist. That’s the method of giving radiation to any remaining thyroid tissue by ingesting radioactive iodine, which is then absorbed by the thyroid. It would render me radioactive for a few days, but it has few side effects. The lymph nodes around my thyroid turned out not to be a real issue as they were, in my unique anatomy, down my neck further than normal. The doctor did take one parathyroid to test, just in case, and we won’t know about that for several weeks.

It takes a village. Beth stayed with me last night so John could go home. Mom and Kim got the kids to bed and walked Domino. Mom will be here all week and friends have started a dinner list, as usual. We are blessed beyond all understanding with the best friends and family anyone could ever hope for. We often feel we are wearing out our welcome, but they insist on helping anyway. Humbling for sure.

Just a short story about Tanner… she has been collecting soda can pop tops for Ronald McDonald house at school and home. She gets them from all the kids at her lunch table and brings them home and puts them in a little bag… all her idea. It has been driving her crazy that a little boy in her class won’t give her his pop tops. The morning of my surgery she asked me to print out a picture of her with long hair and with no hair. When I asked why she said, “I’m going to show Jordan so he knows why he should give me the pop tops.” LOVE that never give up attitude!

Thanks for all the well wishes. Can’t wait to get home.


Clinic Day #38 – What a Day

August 11, 2010

I had such high hopes for Ativan easing Tanner through the LP today, but it did not turn out the way I had hoped at all.

The day started at about 2 am when Tanner woke with a nasty headache. I gave her some painkiller and she went back to sleep, but woke at 6 am screaming and clutching her head. I had a moment when I was right back to the night of her bactrim reaction; screaming and clutching her head was the last thing she did before going unconscious. I had to fight the impulse to throw her in the car and race to the hospital. But, then I remembered Cari saying something about headache being a possible side effect of the IVig transfusion. The on-call doctor confirmed my suspicions and told us to give her a full dose of oxycodone. If that wasn’t enough, they could give her morphine in the clinic.

Poor Tanner spent all morning with a horrible headache and nauseated. She slept in the car on the way to clinic with a trash can in her lap, and I carried her into the hospital. But, she started to feel a little better… until we gave her the ativan. Oh my.

So, ativan is an anti-anxiety med that has the added benefit of easing nausea as well. It seemed like the perfect choice to use for the LP. We have given it to Tanner before in a pill form and she did great on it. Just knocked the edge off of her. Apparently, the IV version works a little too well on her.

First, I noticed slurring and stumbling. Then, the silliness started. And, finally, the agitation and complete lack of impulse control set in.

By the time we got to the pre-op waiting area, she was just as silly as she could be. When I went up to register her, I noticed someone running… fast… out of the corner of my eye. I turned and it was… Tanner. She was bolting, running from a surgery she desperately did not want to have. She looked crazily gleeful, but turned panic-stricken and terrified when I caught her and tried to get her to let the nice lady put an armband on her. I knew when I heard the woman calling for help for the “child having an anxiety attack” in the lobby, that we were in trouble.

Usually, John and I do LP together. We both like to be there. But, today, John stayed home with Jake and I was solo, which made running down my little runaway, bogged down with a computer bag, purse and a bum neck, darn near impossible. We ended up putting me in a wheelchair with a vice grip around Tanner in my lap as the nurse pushed us to the pre-op area. She was totally disconnected from reality.

Sadly, being disconnected from reality didn’t change the way it all came down in the end. It happened the way it always does, no matter what we do. At the very end, she yelled, “Is that the sleepy milk?” and begged me to hold onto her and not leave her. So pitiful.

The doctors and nurses and I convened afterwards and just decided to give up on the anti-anxiety approach and just go straight at it from now on. If we have to hold her down, so be it; it’s what we end up doing anyway despite all efforts otherwise. They said she is smart enough to figure out every way we try to disguise it.

After she fell asleep in my arms on the table, I laid her down and kissed her and reminded myself that we just have four more of these before August 6, 2011. Just four more.

All the agitation was gone after she woke up from surgery. In fact, when I went to recovery she had the nurses totally cracking up because she was talking a mile-a-minute and being really funny. It took that damn ativan until about 4 pm to really wear off. Never again.

The good news is that she didn’t get sick from the methotrexate injected into her spine this time. She still has the headache though; it hasn’t gone away yet.

Tomorrow is the first day of school. Earlier today, it seemed impossible to think she would make it, but as always, Tanner’s will astounds me. We spent the last half hour before bed packing up her backpack, sharpening pencils and painting her fingernails. She’s ready.

In the retelling, today’s story seemed somewhat funny, but as is most often the case, it didn’t seem that way at the time. It occurred to me this afternoon, that the only difference between today and every other day Tanner has had an LP is that she didn’t have any impulse control today. The impulse to run away must be there every single time for her. Today, she was able to indulge herself and run wildly through the lobby, trying to escape a disease she never asked to get and a fate I would never wish upon anyone, much less a seven-year-old.


One Down, One to Go

August 9, 2010

A little IV pole never stopped anyone from playing legos

All finished with the IVig transfusion. It didn’t take as long as we expected. Apparently, the first time they give the infusion, they have to do it slowly in case the child has a reaction. But, the next time, they can infuse faster since they know she didn’t have a reaction last time. So, it was a shorter visit than we expected, which was a great surprise.

Still, we were there for about three hours, but actually had a pretty good time. The kids were so into playing legos that they didn’t want to leave. They also had a good time with Guy Gilchrist, the man who draws the Nancy cartoon from the newspaper. He was at clinic teaching kids to draw. He also drew the Muppets cartoon for years and taught Tanner to draw Kermit. He was funny and entertaining and helped pass the time.

Tomorrow is Tanner’s last day of summer vacation. Wednesday, she goes to clinic and Thursday is the first day of school. We’re going to see a movie in the morning, registering for school in the afternoon and then, hopefully, swimming with friends.

Wednesday morning is the dreaded lumbar puncture. Tanner is very worried about it. We’re going to give her ativan in the morning, an anti-anxiety medication, and hope that helps her get through it with the minimum amount of trauma. Please pray for her. It’s wrong for a child to have to worry so much about something.


A Quick Update

July 27, 2010

Jake hid in the garage during the shaving cream fight

Sorry it’s been a while since I last posted. A few of you… ahem… (you know who you are) have gently reminded me I have been slacking a little. As my friend Ashley said, though, when I don’t post for a while, it usually means everything is great.

It is. Great, I mean. We’ve been busy enjoying the end of summer before school starts in a few weeks. I’m having that thyroid surgery tomorrow, so summer is pretty much over for me and I’ve been trying to squeeze in the last little bit of time with the kids before I’m out of commission for a little while.

So, here’s the short story about the last week or so: We had water day in the cul-de-sac… slip n’ slide, water balloons, shaving cream fights, etc. We’ve checked a few items off our family summer fun wish list like making homemade ice cream and swimming at night with the lights on in the pool. Tanner’s in dance camp this week which will culminate in a show that neither John nor I will be able to see, but Aunt Beth and E. and Jake will attend. And, other fun summer stuff like bike riding, swimming and throwing rocks in the creek.

So, surgery for me in the early a.m. and I probably won’t post for a few days until I can be sure that my posts will be coherent (pain meds and public forums do not mix). We are, as always, well taken care of by our family and friends. Our support network is nothing, if not efficient, by now.

Wish me luck.


One Year

May 30, 2010

One year ago today, at about 5:30 pm, I stood in the Vanderbilt Children’s Hospital ER and asked a young, nervous resident, “Are you trying to tell me my daughter has leukemia?”

When he nodded, solemnly in response, I distinctly remember taking a step back from Tanner’s gurney, so she couldn’t see my face as I fought to comprehend how a sudden backache in the middle of the night could turn out to be leukemia… couldn’t see me crumple in disbelief… couldn’t watch my eyes grow wide in horror as I bent over at the waist and pushed a scream back into my mouth before it could make a telltale sound.

I was alone with Tanner at the ER. John was home with Jake, and my friend Beth, who had come so quickly when I called, was on her way back to our house to trade places with John so he could come to the hospital.

I called John and told him to come quickly, but didn’t tell him why. No one should drive with that kind of news rattling around in his head. When he got there, I took him out into the hallway and told him what the doctor had said and we held each other and cried.

The next two days were a whirlwind of false hopes that it could be something else followed by a deafening silence when the bone marrow biopsy results were definitive. This was it… our daughter had cancer.

It’s hard to believe it’s been a year since that day. It’s trite to say, but it really only seems like yesterday. My memory is now organized by the things that happened before May 30, 2009, and the things that have happened since. They feel strangely like two different lives.

It’s not a day I want to celebrate… this diagnosaversary, as some call it… but it’s too big to let pass without mention and without reflection. It changed our lives, mostly for the worse, but admittedly some for the better. We now know the incredible strength of our daughter and the unending and unexpected kindnesses of those we know and of those we don’t.

Tanner is asleep on the sofa as I write this, having given in to the affects of the high-dose steroids she takes, her new hair curling softly around her peaceful face, her chest rising and falling slowly. I am struck with the fact that she is alive… not just a little, but a lot alive. She is thriving and growing and having fun, despite it all.

She had made it through one year, and she will make it through another and then just 67 more days after that, she will take her last dose of chemo. She will just stop, wherever she is in her monthly chemo cycle, on August 6, 2011. She will be eight years old. And, we will work hard to make all of this a distant memory and to use what we have learned from it to make our lives even better than it could have been BC (before cancer).

One down and one to go. Go get ‘em Baby.


Compassion Fatigue

April 2, 2010

This is a risky post. It will not win me any motherhood awards, and it will likely make a few people cringe. But, I try to speak the truth here, when I can own up to it, and to paint a realistic picture of what this journey is like for us and for the countless other families who endure the pain of caring for a sick child, or even a sick adult.

I like to call it “compassion fatigue.” It’s my term for when I have been sucked dry of all empathy and I can no longer see Tanner’s suffering as anything other than an annoyance to me. I’m there right now. It’s 10 pm and for the second night in a row, Tanner is still awake and I am bunking in her room. She is terrified thinking about a TV show she saw five minutes of the other day before we realized it was scary and changed it. She has come out of her room no less than 20 times since we put her in bed at 7:30. We had a day full of activity and I know she must be exhausted. And, I know with my brain that she must truly be too scared to care about consequences because she has opted to endure several of them in order to continue coming out of her room and to avoid sleep.

She also, I believe, has a urinary tract infection for which we will have to go to the doctor in the morning to have a urine sample analyzed, if we’re lucky. If we’re not lucky, we will end up in the ER sometime tonight. I’ve had a urinary tract infection and I know how it hurts, so in my brain, I know she is uncomfortable, although we have given her a healthy dose of oxycodone.

I also know in my brain that she didn’t mean to skin both knees today and have to be carried 3 blocks home, and that she didn’t mean to tucker out on the hike we took this morning and have to be piggy-backed a good ¼ mile or more back to the car. I know in my brain that she didn’t know that popcorn would burn her mouth when she asked me to make it after asking for and receiving two cartons of macaroni and cheese and three glasses of milk. She didn’t know we would have to throw it away and I would have to interrupt my dinner for the 10th time and get her goldfish instead.

In my brain, I know all these things and I know I should be sympathetic. But, unfortunately, your brain doles out knowledge but your soul doles out sympathy and understanding, and my soul is all shut down today. I have compassion fatigue… nothing left to give. All I can hear right now is “I want…,” “I need…,” “Get me…” “When will you…” The part of me that cares about the child behind these requests stopped functioning sometime around 1 pm today when Tanner interrupted the 15 minutes I tried to claim to myself eating lunch on my bed with the TV on. She needed miralax because she felt constipated. A realistic request, but so ill-timed.

I know she is only six years old and that she doesn’t understand when she’s asked for too much, but she has. I’m just filling requests like a begrudging robot at this point.

My husband wonders why I stay up so late after everyone is gone to bed. It’s not that I don’t need the sleep. I fall asleep sitting up almost every day while I’m putting Jake down for a nap. I stay up after everyone goes to bed because I know, if I am lucky, that there is a good chance that for hours, no one will ask me for anything. That I can do exactly what I want to do, uninterrupted. And, it’s worth whatever sleep I lose doing it, because it preserves my sanity and allows me to wake up the next morning and fill requests all day without feeling resentful about it. I have a feeling a lot of Mom’s do this.

But, I think that having a child with cancer adds a layer to Momdom that complicates things. That makes your need for a compassion recharge that much greater. And, I’m fresh out.

It’s an ugly thing to talk about and definitely not one of my finer moments, but it’s where I am. Tomorrow, after the visit to the pediatricians, and possibly the Vandy ER, after the Easter Egg hunt at church, I will run away. I will go to the movies with a girlfriend, or even just by myself. And my wonderful husband will recognize my need for this recharge and send me off with the reassurance that I should stay gone as long as I like.

And, when and if I do come back (lol), I will do more than just go through the motions. I’ll add a kiss and a hug to the bandaid and Neosporin routine. And, I will actually mean it.